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AVM Survivors Network

Seeking advice on PAVM

#1

Hi, I am new to all of this. About a month ago I underwent a chest X-ray and subsequent CT scan due to later diagnosed costrcondroitis, but they found an Pulmonary AVM in my right middle lobe. I had an embolozation procedure done a week ago & have quite a few questions that no one is answering.

Now that I’ve had the procedure, do I still Need antibiotics before dental work? Will I forever? What about before other surgery? I have surgery planned to repair a hernia in 8 days, but don’t know if I should request antibiotics. Also, do I still have to avoid scuba diving? What about skydiving (I enjoy this but am afraid to do it again now that I know I had an AVM). will the coil dislodge? Will the AVM die or shrink now after the procedure or will I always have to worry about blood clots, bacteria and bleeds?

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#2

you should ask your doctor. but If i have to answer, I don’t think antibiotics is related to AVM at all. you can take or if you don’t want to take that’s fine as well. diving and sky diving should avoid until your AVM is cured. why? you shouldn’t hold the breath if you have AVM and also you shouldn’t make your heart beat too fast. your AVM might die or come back it depends on size/location/duration of AVM and effectiveness of procedure. but I think you don’t need to worry too much. I have an AVM since birth and I am living with it for 36 years till now.

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#3

@HeatherT

PAVMs are among the rarer AVMs, so few of us will be able to share our experience. There are a number of people in the @PulmonaryHeartHHT group who may have had advice on what to do / not do post embolization. I hope a few of them will chime in.

As Min says, do talk to your doctor about these things. We can’t give medical advice, only share what we have been told.

In general terms, the idea of embolising the AVM is that it blocks off the naughty connections from artery to vein and so should remove your risk of a bleed, or bring it down to the same risk that any normal person has. The coils, etc should stay in place and the idea is to resume life as normal.

My experience reading through the pages of this forum is that if an AVM is not 100% closed off, they can resume, so it would be good to know from your doc that he/she has closed off 100% of the AVM or only been able to reduce your risk of a bleed, rather than obliterate it. Since you’ve only had your embolization a week or so, they will have a view but they will probably want to re-examine you in a couple of months, or 6 months (depending on the doctor’s preference) to check that all is nicely closed.

I think the overall idea is that you will be able to go back to life as normal and forget that you had an issue.

In regard to the antibiotics, talk to the doc and make sure you understand when / why / if the antibiotics are important.

In regard to scuba diving and sky diving, I would avoid for the moment, until you’ve had a re-scan and you agree with the doctor that the embo is 100%

I don’t know how long term embolisations are for PAVMs. Mine was a brain embolization and my doc said “resume life as normal” but I can see that extremity and facial embolisations seem rarely permanent. My own personal theory is that in the skull, there are no / few moving parts to disturb the embolism material whereas in an arm or leg or hand or face, there are lots of moving parts. Hence, I don’t know how susceptible a PAVM is to anything like that. As I say, that theory about movement is entirely in my head (not something I’ve read) but it does seem to me that extremity and facial AVMs are ridiculously difficult to fix and fix permanently. PAVMs I don’t know.

Talk to the doc and I hope some PAVMers will also offer their experience.

Very best wishes

Richard

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#4

I was diagnosed with a PAVM in my lower right lung - 3.2 cm in June of 2013 and have several coils and one that is now less a 1 cm. I have never felt better - the best part was being “undiagnosed” with asthma. I do have to go back every year and have a CT; but only if it grows. So now its been every other year!

My lung doctor told me that any time my gums are being cut into to take 2000 mg of Amoxicillin (which my dentist gives me every time). I don’t like how they make me feel; but I would much rather be safe than sorry.

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#5

I just Wanted to update my experiences. I have A follow-up after the embolization procedure. After many questions that the Physician’s Assistant and the Pulmonary Specialist couldn’t answer they both admitted to only have 1 patient in their whole career with a PAVM! I asked If I should visit an HHT center for more answers (even though I dont have HHT). The doctor said they is a very small center at the UCSD Medical Center and that he knew the specialist there. He said he’d reach iut with my questions & get back to me. He emailed and said that with PAVM’s, even AFTER embolization I must still Always take antibiotics before dental cleanings and other dental procedures because of the dislodging of bacteria that could get in my blood stream and cross the barrier of another unknown PAVM or bypass the coil. I am Also not allowed to scuba dive EVER, due to the gas bubbles in your blood stream upon acension. Skydiving is fine, there are no issues with that. I need to have a bubble test done and another CT scan in 6 months.

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#6

Hey Heather,
I notice a majority of people saying ‘Ask your Dr’ but I’d be recommending you ask you dentist. Having had a fair bit of dental work done prior to neurosurgery and then a lot more done post surgery I have found the pre surgery dental was done without any antibiotic barrier BUT since surgery the dentist won’t do a thing without antibiotics. When I asked why it was explained to me that an oral infection can be present without us knowing and the last thing they want to do is release any such infection throughout the body to infect a surgical site. Now as I say my surgery was neuro and dental is fairly close by so it may just be a case of the dentist playing it safe. But now even when I call to make a dentist appointment the receptionist tells me straight up “You need an antibiotic guard before the appointment”.

Merl from the Moderator Support Team

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